when care meets love

When Caregiving Becomes Part of You

Each of us inhabits different roles throughout life. Whereas everyone can point to a calendar to explain the last day they were employed at a particular workplace, informal roles don’t have clear endings. Too often, caregivers are unprepared to make sense of what happens when the role they occupied continues shaping them long after others believe their caregiver role “ends” because . . .

Caregiver tasks may end but not the parts of you that were shaped by the role itself. Others may believe that caregiving ends when your loved one moves into a nursing home, assisted living facility, or when a loved one dies. With this noticeable shift, you are expected to seamlessly return to your previous life. But this expectation doesn’t often fit with how you see yourself. Too much focus is on what you did in the care role and not enough attention is given to who you became throughout the process. The disparity between what you thought you would feel—one step closer to your old self with each passing day—and how you actually feel—a revisiting of unease with each passing day, can’t help but create more confusion and feelings of inauthenticity.

“Life can now return to normal,” others proclaim. But what others consider normal may no longer be what you consider normal.

“Now you can start over,” you are told. Start over? Doesn’t that mean denying that you were living while you were caregiving?

“Now you can get your self back again,” you are reminded. But what if you don’t want to return to your old self?

Although family, friends, and colleagues may sincerely believe that life can return to normal when caregiving “ends,” you know that’s not really possible.

Caregiving may have radically interrupted your previous life, but somewhere along the way, it became a guide to living. You are not who you once were.

Your understanding of normal has been irrevocably changed.

The clarity of your caregiver role has been replaced by an overwhelming sense of ambiguity. The emptiness of not knowing what to do in response to your role change can overwhelm in ways you couldn’t have predicted. The exhaustion of care is replaced by a different kind of exhaustion: How do I explain to others that the values that I developed in my caregiver role are still with me?

The clarity of knowing what was expected of you as a caregiver, however challenging, is gone. Now, the uncertainty of what you are to do without a clear and overriding purpose of care can’t help but make you doubt who you are and what you should be doing. When you were a caregiver, every day was clear in its purpose as the routines of care were the ultimate guide. Unending exhaustion was part of your everyday role, but now you find yourself exhausted by the apparent purposelessness of the everyday, not marked by life and death, pain and suffering, love and connection, but by trivialities that no longer make any sense.

How do you explain that you miss parts of yourself as a caregiver, or at least the parts of your role that made it clear what you were supposed to be doing and how you were supposed to act?

Care doesn’t stop when caregiving ends. Others may no longer call you a caregiver, but the impact of your experiences doesn’t just evaporate the moment your “caregiver” role is omitted from how others label you. Just when family and friends believe your caregiving role is over, you may begin thinking about your experiences in ways that may have been too difficult to comprehend when you were so deeply in the experience. Care isn’t something you can turn off immediately, or even slow down when the caregiving role changes. Though others may no longer refer to you as a caregiver, the care that made you a caregiver has no shelf life.

When it comes to roles that shape how we think about ourselves, there is no clear ending point. Caregiving doesn’t end even though the responsibilities that once characterized that role may cease.

Caregiving isn’t just something you give; it’s something you become.

You don’t “recover” from being a caregiver because the experience has become such a vital part of who you are that to let go of that part of yourself would also mean relinquishing everything you learned in the process of caring for someone you love.

I can’t thank you enough for putting into words what I struggle with since the death of my husband two years ago. You totally validate my confused and distressful feelings while others think if I just travel, all will be good for me. I struggle with my new identity every day. My church and volunteer activities give me purpose, but I still feel very ill at ease in this strange new world. And the grief of profound loss does not go away.

I will never stop being a ‘caregiver.’ This role and experience has forever changed my life and definition of who I was, and still am. Being a caregiver was both stressful and life transforming. In many ways I have been traumatized. But I am also a survivor. I will never see life the same again. A key thing that I have learned is that there is so much that I have no control over. Except, of course, the way I perceive, and respond to, things.

So much of this resonates with my circumstances, as does Terri’s response – 10 years of being primary caregiver for my Mom (with Alzheimer’s), last 4 years of that intensive involvement with additional home care resources. And, the last year of her life was comfort care, with her final three months enrolled with home palliative care. I’m still recovering from the exhaustion. Because so few make the choice I made, I have been going against the stream of dominant culture in caring for a long time. So, too, in my grieving and rebuilding my life. There are inadequate resources and supports for caregivers, and even less for me now. “… you are expected to seamlessly return to your previous life” has been challenging! Especially dealing with others assumptions and expectations of how “easy” my life must be, now.

Despite the costliness of this choice – which has been huge – I am grateful I was in a position to say “yes” to caring for Mom in this way. The gift of this time and responsibility is something I cherish. She cared for me at my most vulnerable and in need of protection, when I came into this world and I had the privilege of returning the favour to her. She had days full of life and meaning, to the very end. Because I said yes.

Allison,
Thank you for sharing your deep care insights. Because you’ve been “going against the stream of dominant culture in caring for a long time,” your words mean so much to the Unprepared Caregiver community. I hope you find a common bond here with us. With deepest gratitude.

This is just so wonderful and true, Zachary. I notice that a kind of ghost, anticipatory post-caregiver person inhabits me. But I think it’s a false identity, because the truth is I have no idea who I would be when I am no longer a caregiver. It’s just a trick that my mind plays. Thank you again for such a thought provoking post. Sharing!

Thank you so much for another insightful and helpful post. This one really hits me because even though I was not a caregiver I recently lost a dear, dear friend. Two things you write particularly strike me.

First, “Too much focus is on what you did in the care role and not enough attention is given to who you became throughout the process. The disparity between what you thought you would feel—one step closer to your old self with each passing day—and how you actually feel—a revisiting of unease with each passing day, can’t help but create more confusion and feelings of inauthenticity.” That rings so true to me — how we thought we would feel versus how we actually feel.

And second, the changing nature of who we are, and the need to be aware of that: “You don’t “recover” from being a caregiver because the experience has become such a vital part of who you are that to let go of that part of yourself would also mean relinquishing everything you learned in the process of caring for someone you love.”